Life-saving drug scarce, patients suffer

“The doctor has prescribed four tablets of D-Penicillamine daily, but I haven’t been able to give her even one for the past 10 days,” said Saima’s father, Anjum Naim, an Okhla resident.Durgesh Nandan Jha | TNN | December 08, 2016, 08:11 IST

NEW DELHI: Saima was only six when her older brother Afzal suddenly started complaining about pain in the legs and knee joints. Before his parents and local doctors could understand what caused it, his condition aggravated and he died. He suffered from Wilson’s disease, an inherited disorder that causes accumulation of copper in the liver, brain and other body parts. This was in 1998.

Today, 18 years later, Saima is staring at a similar fate. This is because D-Penicillamine, the indigenously manufactured drug to remove copper from the body, is unavailable in the market. “Its imported version is 15-20 times costlier and difficult to get,” said Dr Anupam Sibal, paediatric gastroenterologist and group medical director of Apollo hospital, who is treating Saima.“Saima was diagnosed with Wilson’s disease when she was 10 years old. She responded well to medication and got married recently. I am still trying to arrange the medicine for her,” Dr Sibal added.

“The doctor has prescribed four tablets of D-Penicillamine daily, but I haven’t been able to give her even one for the past 10 days,” said Saima’s father, Anjum Naim, an Okhla resident.

Thousands of patients like Saima are reeling under a crisis due to a scarcity of the drug and some of them have even developed liver and neurological complications, doctors said.

Dr SK Sarin, director of Institute of Liver and Biliary Sciences (ILBS), said two patients suffering from Wilson’s disease have already come to the hospital for transplant due to liver failure. “I have written to the Drug Controller General of India. They replied that the government is working to solve the crisis,” he said.

Some doctors have suggested that the government should import the drug and provide it to patients at subsidised rates till the crisis of the indigenous drug subsides.

Dr Sibal said they are asking patients not to consume fish, chocolates and nuts that contain high levels of copper. “Copper is an important mineral required for the development of nerves, bones, etc. Healthy individuals excrete excess copper through bile. But as those suffering from Wilson’s disease can’t, it leads to liver failure and neurological complications,” he said.

If diagnosed early, Wilson’s disease is treatable and many people with the disorder live normal lives. Doctors said many patients may die if emergency measures are not taken.

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